We have an excellent but chaotic system. Knowing where to find help, what questions to ask, and deciding what you want to happen at the end of your life is important. But there are some myths about dying that perhaps unexpectedly harm the dying person and deserve scrutiny.
Delirium robs dying people of their autonomy, dignity and last conversations with loved ones, at a time when every moment is precious.
Symptoms are highly distressing to experience and watch. Confusion, incoherent communication, poor attention, agitation, drowsiness and hallucinations are some markers of this common complication for people dying in hospital from cancer and other advanced illnesses. On average one in three people in end-of-life hospital care are affected.
Doctors commonly prescribe antipsychotic medications to try to relieve these symptoms. However, our study just published in JAMA Internal Medicine, raises serious concerns about their safety and efficacy.
So, what are we to do for people experiencing delirium, who are robbed of their mental awareness and ability to communicate?
There’s no way around it: children sometimes have to hear it like it is. Despite our desire to keep their early years carefree, we may not be doing them a favour by keeping some hard truths from them. And for those things that are inescapable, like the death of a family member, glib answers won’t do.
We all learn at some stage that the world is not as we’d like it to be. That is possibly the single most important lesson in life. The big question is how to teach it to our kids, and when.
The “when” is sometimes out of our control, as circumstances can dictate. But there are parts of the “how” that can be more manageable.
Children are not empty vessels
Kids create deep and powerful narratives about the world regardless of what we do or don’t do. They do this for the same reasons we all do – to explain how the world works and to create meaning.
It is a mistake to think this narrative is absent in them until we decide to help create one. The reluctance we sometimes have to involve ourselves can be a result of this naive view.
We imagine they are somehow neutral or unsullied in their views, and that when we talk to them about hard issues we are forcing them to come to grips with an imperfect world.
We don’t always know what they don’t know. We assume they have developed a lot of cultural norms when they haven’t, and we assume they are unaware of things they have really thought a lot about.
One thing is sure: if we don’t help them make their narratives, they will do it themselves anyway, and perhaps not in ways that are healthy or optimal.
There are two important things we can do as parents to prepare our children for some deep and potentially disturbing conversations, and to help them build a more rational picture of the world.
The first is to help them make sense of the world through frequent and long conversations. Making meaning is the prime function of language, after all. This is where an established behaviour of talking is critical.
The only way to know how they currently see things is to talk with your child – a lot. Talk about issues big and small, and give them the chance to ask things that take time to well up in conversation.
The second is to treat them as rational beings capable of making sense of what is going on around them.
Children are far more rational than we give them credit for. And they are far more capable of deep insights than we usually imagine.
I work in the area of teaching children to think. The ability of very young children to do this well is a constant reminder of how our educational system underestimates them.
The thing that makes a rational approach possible is treating conversations as two-way exchanges. We don’t just talk to children to instruct them, and we don’t just talk to understand them – we also talk so we can understand each other.
This is a critical point. By talking to understand each other we give children the opportunity to normalise their thinking, and to help understand the norms of mature social thinking. This in turn is important because it provides the ground for a rationality based in social competence, in which we reason to solve problems through discourse and social interaction.
As the Russian psychologist Vygotsky wrote in Mind and Society, children first learn a competence socially and then internalise it.
Every function in the child’s cultural development appears twice: first on the social level, and later, on the individual level.
To put it simply, if you have not modelled how to talk through difficult issues with a child, that child has not learned to internalise a mechanism for dealing with such issues.
This is a key component of teaching resilience – and is there anything we want for our children more than this?. For without the cognitive tools to manage change and uncertainty, they will be less resilient than they could be.
Whether the issue is the crashing reality of Santa’s state of existence, the death of a family member, or a dramatic change in lifestyle, there will be limited recourse for children to rationally understand the situation, and their role in it, if they have not been taught these skills.
So talk to your children about how they reckon Santa does it. Talk about mortality and what it means for us as humans. Talk about what life was like in the past and could be like in the future. Explore and unpack all the implications of these things with them.
Or just talk with them a lot about anything. Give them opportunities to come up with questions about these things themselves. If you give them the chance, they will not disappoint you. And by doing so, you will make them less disappointed.
Predicting how long a patient will survive is critically important for them and their families to guide future planning, yet notoriously difficult for doctors to predict accurately. While many patients request this information, others do not wish to know, or are incapable of knowing due to disease progression.
Fuelling this complexity are families who prefer the patient not to be told for fear of torpedoing hope and reducing the quality of time remaining. Conversely, patients may want to know themselves, but do not want to distress their loved ones with this knowledge. Continue reading →
If death is the final taboo, it might not be for much longer. There has, in recent years, been increasing effort to promote conversations about death and dying, both in the home and in more public settings. For example, death cafes, first launched in Switzerland in 2004, have spread around the world, enabling people to speak about their fears over cake and coffee.
Our reluctance to talk about death is often taken as evidence that we are afraid, and therefore suppress thoughts about it. However, there is little direct evidence to support that we are. So what is a “normal” amount of death anxiety? And how does it manifest itself?
Experimenting with death
Judging by studies using questionnaires, we seem more bothered by the prospect of losing our loved ones than we do about dying ourselves. Such studies also show that we worry more about the dying process – the pain and loneliness involved, for example – than about the end of life itself. In general, when we are asked if we are afraid to die, most of us deny it, and report only mild levels of anxiety. The minority who report high levels of death anxiety are even considered psychologically abnormal – thanatophobic – and recommended for treatment.
On the other hand, our tendency to report only low levels of death anxiety might be a result of our reluctance to admit to our fear, to others and ourselves. Based on this hypothesis, social psychologists have, for almost 30 years now, examined the social and psychological effects of being confronted with our own mortality. In well over 200 experiments, individuals have been instructed to imagine themselves dying.
What’s worse: the death of a loved one or facing our own death? Photographee.eu
The first study of this kind was conducted on US municipal court judges, who were asked to set bond for an alleged prostitute in a hypothetical scenario. On average, judges who were confronted with their mortality beforehand set a much higher bail than those who were not confronted – $455 versus $50. Since then, many other effects have been found among groups including the general population in many different countries.
Besides making us more punitive, thinking about death also increases our nationalistic bias, makes us more prejudiced against other racial, religious and age groups, and
leads to other such parochial attitudes. Taken together, these dozens of studies show that being reminded of death strengthens our ties to the groups we belong to, to the detriment of those who are different from us.
Reminders of death also affect our political and religious beliefs in interesting ways. On the one hand, they polarise us: political liberals become more liberal while conservatives become more conservative. Similarly, religious people tend to assert their beliefs more fervently while nonreligious people disavow more.
On the other hand, these studies have also found that thinking about death tempts us all – religious or otherwise – towards more religious belief in subtle, perhaps unconscious ways. And when the reminder of death is sufficiently powerful and when participants are not mindful of their prior political commitments, liberals as well as conservatives tend to endorse conservative ideas and candidates. Some researchers claim that this could explain the US political shift to the right after 9/11.
What do the results mean?
But why does the prospect of death make us more punitive, conservative and religious?
According to many theorists, reminders of death compel us to seek immortality. Many religions offer literal immortality, but our secular affiliations – such as our nation states and ethnic groups – can provide symbolic immortality. These groups and their traditions are a part of who we are, and they outlive us. Defending our cultural norms can boost our sense of belonging and being more punitive against individuals who violate cultural norms – such as prostitutes – is symptom of this.
Consistent with this interpretation, researchers have also found that reminders of death increase our desire for fame and for children, both of which are commonly associated with symbolic immortality. It turns out that we do want to be immortalised through our work and our DNA.
Thinking about death makes us dream of being famous. Andrea Raffin
So what should we make of these new efforts to demystify death and dying through conversation? It is hard to say. Increasing death’s profile in our imaginations, private and public, might make us all more punitive and prejudiced, as the research found. But then perhaps we get these negative effects precisely because we are unaccustomed to thinking and talking about death.
In exposure therapy, carefully exposing patients to the source of their anxiety – an object, an animal, or even a memory – reduces their fear. In the same way, perhaps this most recent taboo-breaking trend will inoculate us psychologically, and make us more robust in the face of death.
It is no coincidence that we describe the “pain” of loneliness or the “agony” of rejected romantic feelings. Paper cuts can be “excruciatingly painful”, but so can watching the social mishaps of Basil Fawlty or David Brent. Personal criticism can be “stinging”.
The book The Patient’s Brain outlines the evidence that later evolutionary traits such as social cognition and language appear to have grafted themselves onto the ancient brain functions that alerted us to external threats or bodily damage.
Words are neurological events. They are meaning-laden puffs of air that our brain transforms into knowledge, opinions, emotions or danger signals.
Shakespeare, perhaps the greatest wordsmith of all time, frequently used bodily sensations including sensitivity to pain as metaphors. If you’ve ever complained about the “bitter cold”, called an ugly sight an “eyesore” or felt it “sharper than a serpent’s tooth … to have a thankless child” you might know what I mean.
Where do you want to die? Provided symptoms can be controlled, most people at the end of life prefer to die at home. However, just over half of Australians who died in 2011-12 died in hospital.
In the same year, about A$2.4 billion was spent on hospital care for people aged 65 or older in their last year of life. But only a small fraction of that amount is spent supporting people to die at home.
This money would be better spent on palliative care services. Among other benefits, these more than double the chance of dying at home through the provision of home-based support services such as nursing.
Health funds spent on treatments and health services of negligible and questionable value, such as chemotherapy at the end of life, should be reallocated to palliative care services. This would improve our chances of dying well and in accordance with our wishes.
Palliative care is care provided to people living with a terminal illness where a cure is no longer possible. The aim of palliative care is to achieve the best quality of life possible for patients and their families during the illness and after death by relieving symptoms, addressing emotional, social and spiritual needs and reducing suffering.
This type of care is provided by teams of assorted professionals such as chaplains, doctors, nurses, pharmacists, physiotherapists and social workers. It is provided across all types of settings, including hospitals, hospices, residential care facilities and at home.
A recent report suggested investing A$237 million in providing palliative care services at home rather than in hospital wouldn’t raise the total health care spend but would increase the proportion of Australians dying at home from 14% to 30%.
Inevitably, and appropriately, some people will need or desire hospital care at the end of life. The Australian Institute of Health and Welfare’s recent update on palliative care services in Australia showed that over the past ten years there has been a 52% increase in hospitalisations for which the main purpose of care is palliation.
This trend will continue rising due to our increasing, ageing population and earlier warning of death.
In 2012-13, 42% of people who died in hospital were receiving palliative care. Providing specialised palliative care in hospitals, particularly early on, can reduce hospitalisation costs by shortening the hospital stay and reducing intensive care and laboratory costs, as well as improving quality of life.
But this estimate does not include costs to the individual or their family. Recent research suggests as much as a third of total spending on caring for people at the end of life falls on family and friends.
Without the support of informal carers, home-based care at the end of life would often be unachievable. Smaller, more geographically spread out families, higher divorce rates and changing communities mean these support networks are likely to shrink at a time when the need for them is growing.
When planning health-care services in this setting, it is essential we also think about informal care costs. We need to make sure we avoid over-burdening families who are a vital part of end-of-life care.
Achieving a better death
Without adequate palliative and end-of-life care, people will continue to be cared for and to die in hospitals despite most Australians wishing otherwise. Patients will have a poorer quality of life at the end of life. Families will suffer unnecessarily. Care will not be provided efficiently.
We are all going to die, but how will we die? Investing in palliative care services will improve our chances of dying well and in accordance with our wishes.
Nikki McCaffrey, Health Economist with Palliative Care Clinical Studies Collaborative (PaCCSC), Dept Palliative & Supportive Services & Flinders Health Economics Group (FHEG), Flinders University
It’s hard to predict events in the final days and hours of a person’s life. Some deaths are wonderful – a gentle decline preceding a gracious demise. Certainly these are the sorts of deaths we see in films or on television, where the dying patient bids farewell to gathered family and friends before softly closing his eyes.
These gentle departures happen in real life too – many people simply die in their sleep, and many families and friends share the privilege of witnessing the calm and serene departure of a loved one. Of course, grief follows, but those left behind are able to take solace in the knowledge and memory of a peaceful passing.
Unfortunately for every “good” death, there are many which are much more stormy and drawn out. These deaths can leave families traumatised for many years or simply make the grief that much harder.
This morning an article was published in the conversation by Ray Moynihan and Dr Iona Heath exploring how our society deals with the uncertainty of our future health. Faced with the knowledge that all of us will get sick and die at some stage the authors suggest that this impels us all to try and find the solution to these problems, resulting in the medicalisation of our lives, over-diagnosis and over-treatment.
I hope you enjoy this week’s reads, which include topics like wills, funerals, dementia, research ethics and the experience of a hospice nurse who becomes carer for her mother. I hope there’s no typos – I’m rushing off to a communication skills workshop but wanted to post this before I leave.
As always, please leave your thoughts in the comments box below.